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  • Newbie needs your input/opinions, fearful will not get diagnosed!

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    Old 02-05-2008, 03:42 PM   #1
    danish026
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    Newbie needs your input/opinions, fearful will not get diagnosed!

    So I have suspected I have been hypothyroid for years. Mainly because I am always cold, especially my hands and feet and despite working out strenuously 4-6 days a week and following a healthy high protein diet it is very difficult to lose weight.

    I had a baby 15 months ago. It has taken me 9 months to lose only 20 pounds of the baby weight. Recently, (within the last 2-3 months) I have developed very itchy dry skin all over my face, neck, arms. I've had eczema all my life, but never like this. My face is the worst. It is now covering my eyelids. They are dry and scaly and my face feels like I have egg whites all over it. I cannot wear makeup because I have to put a think cream on every 3 hours just to relieve some of the dryness. Now my eyes are dry all the time. Oh and I drink a gallon of water everyday, take high quality vitamins, omega-3's, etc.

    I have no interest in daily activities. I work out in the morning, but that leaves my exhausted the rest of the day. I feel like I need to sleep all the time. I try to nap when the baby goes down, but cannot fall asleep. I am only getting 6 hours of sleep at night because I'm waking up too early. I never feel refreshed when I wake up.

    So I go to my PCP and he runs some blood test. First set CBC and TSH. Looks like I'm anemic and my TSH is 1.62. So he wants another blood test to figure out where the anemia is from. I tell him I want antibodies, T4, Free T4 and T3.

    Well, he only pulls TPO which is normal. T4, Free T4 and no T3. I'm trying to keep this to the point as I realize it's getting kindof long.

    Basically he has blinders on and says I don't have a thyroid problem. He has never even asked what all my symptoms are! I mainly went to him because my skin was so bad. And my hair falling out all over the place. So tests show I'm iron deficient. I tell him I think it's because my periods are abnormally long and heavy (only within the last year). He said he would refer me to an endo if I wanted.

    So my appointment with the endocrinologist isn't until 3 more weeks! Ugh, my everyday life is being interrupted by all my symptoms. As time passes I'm beginning to think it is all in my head. The reality of my skin and hair is what reminds me I'm not making it up.

    I'm scarred to death that I will be brushed off by this endo too. I need treatment and I need it yesterday. I'm afraid I'll have a hard time finding a doctor who will believe me.

    So what do you all think? You are the experts.. please give me your opinion..
    TSH 1.62
    T4 5.4
    Free T4 0.92

    Do you think I can get a diagnosis for hypo? Do you think I will or should be able to find a doc who will prescribe me Armour?

    Thanks for reading and all your help.
    Dana

     
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    Old 02-05-2008, 07:46 PM   #2
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    Re: Newbie needs your input/opinions, fearful will not get diagnosed!

    Armour may not be your answer yet. You need to know your T3 concentration first. I am thinking that it is thyriod as well it can still be Hashi's too. My symptoms started like yours and the antibodies took a few months to manifest.

    WHat are the ranges on your blood work. They vary and it makes a difference. I wouldn't say you are classic hypothyroid. Look into the signs of hypopituitarism/secondary hypothyroid. It is very common in Hashi's sufferers and is very hard to get treated.. because the TSH stays normal. It does look suboptimal though.. and when you are not optimal for you, but in normal range you can still have symptoms.. I did.

    You are not alone. We will help where we can.
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    Old 02-05-2008, 09:44 PM   #3
    danish026
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    Re: Newbie needs your input/opinions, fearful will not get diagnosed!

    Thanks for responding MG.

    The antibody that was tested is Thyroid Peroxidase- TPO. And it was 15 (reference <35). I think I read somewhere that there is a 2nd antibody to look for, do you know if that's true?

    The range given for the T4 is 4.5-12.5. Mine is 5.4. I found two other ranges on the internet starting at 5.6 and 6.09 so I was thinking it is possible that it is too low for me. Especially given all the symptoms.

    I didn't even list all of the symptoms due to the lengthy post. Just the ones that are interrupting my daily life.

    My free T4 is 0.92 and they gave a reference range of 0.8-1.8

    Thanks, Dana

     
    Old 02-06-2008, 03:38 AM   #4
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    Re: Newbie needs your input/opinions, fearful will not get diagnosed!

    hi dana, for starters....you should be glad that u are going to see an endo. just give it a chance to see what the dr. is going to say. if you are feeling all these things, if the endo is good, they will treat you. they need jobs too. hehehe. i agree with mg that you will receive the support you need here. there are alot of people who are going thru what your going thru. i have found comfort even in my darkest days. it's great to hear from people who understand the pain that ur going thru. even my gp, he's a great dr, but at times the look he gives me, makes me want to poke his eyes out. hehehe. i have hashi's and i had all "normal ranges". good to see that your antibodies test came back within range. tho i am not saying u are clear of thyroid problems. do fight for wat you are feeling. keep us posted. goodluck.

     
    Old 02-06-2008, 04:59 PM   #5
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    Re: Newbie needs your input/opinions, fearful will not get diagnosed!

    "poke his eyes out" LOL.

    Thanks for the encouragement and support. It really helps talking about this with people who know about it.

    I'm just anxious and the symptoms are really bothering me so I'm thinking about it a lot.

    Will let you know how the doctor's appt goes. And yes, I am thankful it's not Hashi's. I am thankful I don't have a lot of things that others have to deal with!

    I should try to focus on that more. Thanks again, D

     
    Old 02-06-2008, 07:11 PM   #6
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    Re: Newbie needs your input/opinions, fearful will not get diagnosed!

    Nice to meet you, Dana.

    The 'other' antibody test is anti-thyroglobulin, or anti-Tg. There have been at least two people on the board who tested negative for TPOs but had high titers of Tg ABs... meaning they had Hashi's just as surely as someone with only TPOs. Insist on this test too!

     
    Old 02-06-2008, 08:16 PM   #7
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    Re: Newbie needs your input/opinions, fearful will not get diagnosed!

    Oh my gosh! Thank you so much! I need to know these things. I realized when I was going through fertility treatments I had to start taking responsibility for my own health.

    I was seen by two different fertility specialists one in Texas, one in Oregon for a period of three years. And I was the one who realized I had a short luteal phase... low progesterone = no baby! That of course wasn't the only problem and the Oregon Dr was very good. But c'mon! That's basic physiology!! Both of them should have caught that and early.

    Since then I realize I need to have a full comprehension of what is going on and to stay on top of them.

    Especially since doctors like my general physician. When I told him about my skin and hair and that I wanted my thyroid checked he said, "yeah yeah, we're going to check your thyroid" as he's looking at the lab sheet. I said, "Ok, I've got a couple more things" He had the audacity to say to me, "Well we need to move this along, I've got a schedule to keep"

    Follow up I specifically asked for antibodies, T4 and T3. He only requested labs on one antibody and T4 and free T4 no T3. Oh well, it's all out of his scope anyway.

    Needless to say next time I need to see a pcp it will be a different doctor!

     
    Old 02-07-2008, 01:11 PM   #8
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    Re: Newbie needs your input/opinions, fearful will not get diagnosed!

    Well, I was running my body composition numbers today and realized I have lost 11 pounds of muscle in 2 months!! I'm eating at 3 hour intervals, protein at every meal, eating an appropriate amount of calories (small deficit to what I need.. no starvation diets here), and doing all my weight training!

    I looked it up and when a person losing muscle and not fat it's because the metabolism has slowed way down and they are using their muscle for fuel. Usually due to skipping meals. However, I am not (skipping) so I know it's because of this stupid thyroid thing that has my metabolism shut down!

    I feel terrible today. Dragged myself to gym. Could only do 30 minutes on stairmaster and bike. My body felt so weak leaving the gym I could barely walk. My legs kept giving out on me. I thought I might even fall down. This sucks.

    This is why I am scarred to death that I will get a doc who looks at my numbers and says, "you're fine, go home".

    I need help and I need it yesterday.

    Also woke up and my skin flaking off both eyelids and around eyes and all the way across my nose

     
    Old 02-12-2008, 09:28 PM   #9
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    Re: Newbie needs your input/opinions, fearful will not get diagnosed!

    It drives me nuts when I start reading a thread and then all the sudden the story drops off and I have no idea what happened to the person. Like someone will say they are going to the doctor and then they never write what happened!

    So here's some more of my story...

    I just got back from my first appointment with an endocrinologist. He has diagnosed me with clinical depression. Or "seratonin deficiency", which sounds better to me. Seratonin is also a hormone, so I guess I was on the right path. I knew there was something off with my hormones. Let me clarify, I am actually a positive bubbly person, so this came as quite a shock. However, I understand what the doctor was telling me as far as what is actually happening in my brain is affecting me physically. More in a way that I get fatigued easily and overwhelmed easily. Not depressed like I sitting around crying about my life. That's not me at all. I just have severe fatigue, brain fog, concentration, etc. (it's a long list)

    It is a systemic condition. He said my hair loss is most definately is related but he wasn't sure about the skin. He says with treatment my skin could clear up but wants me to make an appt with a dermatologist in the meantime.

    So, I am going to take the script he wrote for the next couple of weeks and see how I feel. I actually have an appt with a 2nd endocrinologist in two weeks and am going to get a second opinion. Just to make sure.

    He told me several times that it has nothing to do with my life or what I've done. That it is clinical and inherited. Interesting. We'll see what the second opinion is. I'm not going to tell her what the first doc diagnosed me as until after she gives me her diagnosis.

     
    Old 02-12-2008, 11:52 PM   #10
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    Re: Newbie needs your input/opinions, fearful will not get diagnosed!

    Thank you so much for continuing your story! You're right... I for one love knowing what happens later.

    So... Did this new endo run blood tests? A new round of TSH, free T4 and free T3? How about those Tg antibodies? I thought not. Is there a blood test for "low serotonin"? Did he run that, and have the results so soon? Lots of questions... not because I'm nosy, but because I'm concerned for you. I feel he may be giving you the "hysterical woman runaround". I can't count the number of times I've seen it here... A by-the-book, tunnel-visioned endo who doesn't recognize hypoT when it smacks him silly, because he thinks he's such a cracker-jack clinician that he doesn't have to run tests or even know how to interpret the shades of gray they may reveal.

    Your previous T4 and free T4 are low-normal... at levels where symptoms begin to occur. Your TPO antibodies, while not technically out of range, are not in the expected 0-2 range either. Pregnancy and the post-partum period are among the most common times in a woman's life when thyroid antibodies rear their heads and hypoT develops. Please don't dismiss the possibility that you are indeed hypothyroid and only hypothyroid. "Serotonin deficiency" is part and parcel of thyroid disease, too.

    Keep that appointment! Definitely do not reveal this diagnosis, because that will make agreement with it all the more likely.

    Please do let us know what's written in the next chapter of your story!

     
    Old 02-13-2008, 06:08 AM   #11
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    Re: Newbie needs your input/opinions, fearful will not get diagnosed!

    Thanks so much for the input.

    I was really pushing for thyroid diagnosis.... I pointed out that my t4 were in the low range and t3 and the other antibody (TD?) were not checked. He just kept saying it's not your thyroid.

    My other appt is in two weeks. In the meantime, I am going to make an appt with a dermatologist for my skin. I think what might be happening there is that my eczema has flared up due to stress ... from all this monkey business!

     
    Old 02-16-2008, 01:23 PM   #12
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    Re: Newbie needs your input/opinions, fearful will not get diagnosed!

    My husband is a Nurse Anesthestist (like an anesthesiologist but with less money). One of the surgeons he works with just gave a seminar on hypothyroid and parathyroid patients being mis-diagnosed as clinically depressed. How weird is that?!

    So, I have her (the doctor who gave the seminar) number and will call her on Monday! Yeah!! Hopefully she will help me get the right diagnosis. The timing with that is just more than coincidence I believe.

     
    Old 02-16-2008, 05:21 PM   #13
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    Re: Newbie needs your input/opinions, fearful will not get diagnosed!

    Nothing wrong with a little luck. i wish you the best with this lady. Hopefully she is a forward thinker and will help you.

    MG
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    Old 02-16-2008, 09:48 PM   #14
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    Help

    How do you post a new thread????????

     
    Old 02-27-2008, 01:20 PM   #15
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    Re: Newbie needs your input/opinions, fearful will not get diagnosed!

    Ok, finally saw endo #2 this morning. This is not the surgeon that my husband works with. But I found her on the Top Thyroid Doctors Directory.

    So she ordered blood test for Free T3, Free T4, Thyroglobulin antibody (TgAb), Thyroid Stimulation Immunoglbulins (TSI), and transferrin saturation (for my anemia).

    She also said my neck felt mostly soft, a little hard/slightly protruding on the right side so I have a thyroid ultrasound in two weeks.

    She said my eyes looked asymmetrical and asked if they were always like that. Said they looked like they bulging and asked to see my driver's license picture. She said she couldn't tell from the picture if I looked different. Told me to ask my husband if my eyes looking different. I just asked him over text and he said my eyes have always bulged a little bit. Great!! Thanks a lot! Now in addition to everything else, I come to find out I look like a freak!

    So I forgot to ask her to run calcium level to rule out hyperparathyroidism. I just left a message with the med assistant to ask if we can add calcium to the lab slip before I go.

    The wellbutrin I am on for "depression" is actually helping some. Mainly to get through daily activities. Still fatigued though. And my skin is still a mess. Crazy dry and tight. Have appt with the dermatologist on Friday.

    My personal opinion is that I probably have a nodule and something autoimmune going on.

    I told her that I think we should try me on a small dose of Armour and see if my symptoms improve. She said she didn't want to do that until she sees something in the workup that proves such. At least she's willing to run further tests and do an ultrasound. I got the feeling from her that she would be willing to work with me to find the real answer.

    I would much rather treat the cause rather than put out little fires. She also thought that my hormones could be really out of whack from all the fertility drugs I was on. Now that I think about it, aren't infertility and endometriosis also symptoms of thyroid problems?? So which came first, the chicken or the egg?

    Ok, so that's where I am. Anyone have any thoughts/opinions/encouragement??

    Thank you so much for offering your input and letting me have a place to vent!!!

     
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